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New and hard to adjust

Hi there, This is the first time on here for me although I have been reading posts for some time. My husband was diagnosed with ppms in January following MRI and lumbar puncture.The diagnosis has sent a roller coaster of emotions throughout our family and I am having to counsel 2 of our 3 (teenage) children who have some very real fears and anxieties. Leading up to the diagnosis I read up really well and feel fairly knowledgeable, however my husband chooses to only face things as they occur. My mind is constantly racing about how we will cope in the future whilst being vigilant for any new symptons he develops. We are waiting for a nhs referral to an ms clinic so he can have access to ms nurses and physio and maybe even some counselling. He is a very active, fit sporty man with a demanding job and has had to accept that his sporting ability has declined due to this condition and that it will almost certainly decline further. Other than general weakness in his legs, he has had tingling and numbness in his hands for some time and this morning he had an uncontrollable tremor in one hand. - this was quite a low point and I just wanted to hug him and make it go away. Over the weekend he had said that the tingling had felt better - so ive been wondering whether the tremor has now replaced the tingling? I know it’s very early days for us and its a lot to take in but I’m hoping this forum will allow me to “voice” my worries so I can remain positive and cheerful for him and my family. Thanks in advance for any support

Hi KK, welcome to the site. Although this particular board is mainly for carers, many other folk frequent it.

I am one of those ie the cared for one in our house.

My hubby was my sole carer for many years and wouldn`t hear of getting extra help to give him a break.

He did, however, see how good it was once I`d started getting Direct Payments and we had regular help. Do remember that incase things get too much for you.

As it is early days for you and your family to assimilate the news re your hubby`s diagnosis, there will still be a lot of questions you need to find answers to.

I think it is fairly common for men not to want to know what may, or may not be in store for them, when it comes to illness.

In one way it is good that you want to prepare yourself for the future, but the trouble is, MS is soooo variable and no 2 people with it, will follow the same pattern of symptoms and progression.

In fact there are folk here with PPMS, who are still ambulant and working.

Why not take a look at the PPMS board and ask folk how they have coped.

There was a time when I was diagnosed with PPMS, which turned out to be totally wrong and i dont have MS at all!

I wish you all well and hope you`ll find this forum as supportive and helpful as I and countless others have.

luv Pollx

Hallo KittyKat…I care for my husband (married 2 years ago) although we have been together for 6 years. He was dx in 1998 I think but carried on working for a number of years …as Poll says MS doesn’t follow any set patterns and day to day care needs vary so much, so I just take a day at a time. I read everything in sight when I met D although he has never shown much interest himself!

You should have an MS nurse who are generally very helpful and I deal mostly with speaking to proffessionals, phsio,occupational health, bladder nurse etc as D often doesn’t seem to realise when things go awry!

I can tell you that the most important person to look after is yourself as you can’t care for someone if you are exhausted, so do take advantage of offers of help and breaks, time out for yourself etc

Im sure you will find lots of listening ears here which is often what is needed most so please don’t hesitate to ask ANY questions about things that are on your mind.

Also suggest you contact schools, they may well have counselling available for your children, it’s a lot for everyone to come to terms with.

Tremors along with a host of other symptoms are likely to come and go , again no set pattern

Hugs Kate

Thank you Kate and Poll - your words of wisdom and experience are much appreciated and I will look forward to sharing more with you over the days, weeks, months. I have told the school and my workplace are aware too in case I need to down tools at any time. Thankfully they are being really supportive - as is my husbands work! As said previously - early days for us but we are keen to have contact with an ms nurse and physio - just waiting for the referral - in meantime my husband has dusted off the wii fit and has got all of us involved in balance exercises etc !!! I totally take on board the need for “me time” too and will try to ensure that I continue my own interests too. Thanks again Caro x

HI Caro,

Just wanted to say hello and welcome to our site. I re=iterate everything that has been said above.

I am the one with PPMS. I was diagnosed with RRMS four years, recently been “updated” to PPMS. Please do frequent the PPMS board on here and the other boards, you will find lots of help.

I amm like you. I wanted to know everything I could about MS. My husband is like yours, will deal with it when it comes along. I believe however, that I have to be the expect in my own disease. My doctor advised that and I totally agree.

Remember, everyone’s path is different. Keep that in mind when you feel scared.

Love to you both

Anne

hi kitty kat i am also new to dealing with this my hubby was also diagnosed with ppms in november. only married in march then we found out not long after. been together 5 year and something has alway not been right this is my first time on here but my husband dont get the numbness but does get the tremor. that what lead to the ms. now he is having trouble with upper body. and legs are getting weak rebecca.